Dementia and the Deaf community: knowledge and service access

Abstract

Objectives: This study concerns culturally Deaf people in the United Kingdom who use British Sign Language (BSL). Its objective was to explore how Deaf people's knowledge about dementia and access to services is mediated by their minoritised cultural–linguistic status.Methods: Twenty-six members of the Deaf community participated in one of three Deaf-led focus groups in BSL corresponding with the sample of: Deaf people over the age of 60 without dementia; Deaf people aged 18–60 working professional roles unconnected with dementia services; ordinary members of the Deaf community aged 18–60. Data were subjected to a thematic content analysis.Results: Participants’ concerns about their poor levels of knowledge and understanding of dementia were augmented by their awareness that without sustained social contact in BSL opportunities for earlier recognition of dementia would be lost. Although primary care services were identified as the first port of call for dementia-related concerns, there was widespread mistrust of their effectiveness because of failures in communication and cultural competence. Confirmed diagnosis of dementia was not viewed as a gateway to services and support because Deaf organisations, dementia-related organisations and mainstream adult services were perceived to be ill-equipped to respond to the needs of Deaf people with dementia.Conclusions: Locating problems of late diagnosis within the Deaf community's poor awareness and knowledge of dementia fails to recognise the structural barriers Deaf people face in timely access to services and accurate recognition of dementia-related changes.

Keywords:

• Deaf
• sign language
• access
• dementia

Acknowledgements

Grateful thanks to the focus group participants for their time and enthusiasm for this project. We formally acknowledge RAD (Royal Association for Deaf People) for their assistance with organising these groups and in particular Ruth Geall. This study is one component of the Deaf with Dementia research project, which is a collaboration between the Social Research with Deaf people group and the Dementia and Ageing Research Theme, University of Manchester, with City University London, and the Deafness, Cognition and Language Research Centre, University College, London.

Additional information

Funding

This study is funded by the Alzheimer's Society (UK) [Grant Award Number 119].